(Thanks to the Fibromyalgia Treatment Group for allowing Health Rising to publish their original blog. The Fibromyalgia Treatment Group is a Health Rising Sponsor. Check out their website here and their Facebook page here. Links to Health Rising blogs and some images were added by Cort)
Mistakes Fibromyalgia Patients Make
Dealing with the effects of fibromyalgia (FMS) can be hard enough as it is but there are certain things that patients can do that will enhance their symptoms. It is important to learn what not to do in order to prevent un-needed fibromyalgia flare-ups. Avoiding common mistakes can help you better control your FMS pain and other symptoms.
After all, treatment for fibromyalgia is not just in medicines. It’s a lifestyle
Mistake #1 – Not tracking Your Pain
People with fibromyalgia are in constant pain. The problem is determining when that pain is better or worse. The best way that patients have found is to keep a pain diary. When you track your pain, you will discover certain patterns that seem to help with pain and others that make it worse. If you know when things are better, you can also figure out what made them better and what to do next time.
- Developed by and for FM patients, the Google Android App FibroMapp is one way to track your symptoms.
Mistake #2 – High Expectations Concerning Medications
Hope that you’ll get relief from FDA approved drugs but don’t expect too much. Drug therapy has a long way to go in FM.
There are only three drugs that are approved by the FDA for use with fibromyalgia. These drugs don’t work for everyone and they come with their own set of side effects. They can also be quite expensive. Therefore, learn to be flexible. You may have to try all three to get any good results or you may want to opt for alternative treatments in order to avoid side effects. Work together with your doctor to come up with a good treatment plan. This plan will probably include other forms of treatment besides medications. After all, treatment for fibromyalgia is not just in medicines. It’s a lifestyle
Mistake #3 – Refusing to Consider Off-Label Drugs
Off-label drugs are those medicines that are approved for one condition but are frequently given for another. Examples of this are antidepressants. These are normally given to people suffering from depression or other conditions but many patients with fibromyalgia report dramatic relief for their FMS symptoms. Be willing to consider something that your doctor prescribes as long as you are given an explanation of the drug and understand any side effects that may occur. Ultimately, you have to decide if it is worth the risk.
Mistake #4 – Not Exploring Alternatives
There are many alternative treatments for fibromyalgia that are not considered conventional medicine. However, many patients have positive results from them. For example, yoga would not be a conventional treatment for FMS and performing yoga has helped many fibromyalgia patients learn to control stress, which can cause flare-ups. Other forms of treatment include biofeedback, meditation, and tai chi, another Chinese martial art technique.
If you don’t feel that your doctor is doing all he or she can to help with your symptoms, don’t be afraid to switch doctors.
Sticking with a not fully committed physician may be the most costly mistake.
Mistake #5 – Sticking with the Wrong Doctor
We would all hope that our primary care physician would be able to refer us to a proper doctor to help with conditions like fibromyalgia. Unfortunately, the opposite is often true. Sometimes, the doctor you get for FMS treatment really doesn’t know a lot about this syndrome and will not explore all your options for treatment. If you don’t feel that your doctor is doing all he or she can to help with your symptoms, don’t be afraid to switch doctors.
Look for a specialist, such as a rheumatologist, who focuses on fibromyalgia. The Co-Cure Project has a list of patient-recommended doctors by state.
Mistake #6 – Denying That You are Sick
Many patients who have fibromyalgia try one doctor after another looking for another opinion for their condition. While getting a second opinion is fine, avoid a third, fourth, or more diagnoses. Stop denying your condition as it wastes precious time to find a solution. Instead, read up on fibromyalgia all you can and learn about the different ways patients have found to help themselves. Education is the key to your solution.
Mistake #7 – Not Enlisting Family Support
Many patients make this mistake. Your family support may be the greatest asset in your corner. However, be sure your family understands what you are going through. You can direct them to any number of websites, such as the National Fibromyalgia Association, the Mayo Clinic, or the Johns Hopkins Arthritis Center, that will educate them as to what FMS really is. Again, education is the key. The support of your spouse, parents, siblings, and children is essential but ask them with open eyes.
- Check out “Mom Need to Lie Down Now” for a short film that can educate your family about ME/CFS (and FM)
Mistake #8 – Not Talking About it
Because FM is such a difficult condition take care to look for ways to brighten your day
Sometimes we all need a friend. Don’t be afraid to talk about your condition. Even if you think everyone around is tired of hearing about your condition, don’t clam up. Instead, you can talk about fibromyalgia pain in a way that can benefit not only you, but also others with the same condition by becoming an advocate for a fibromyalgia organization.
Don’t let your symptoms of pain, depression, and frustration make you feel guilty…find activities you enjoy to bring balance and joy to your life
Mistake #9 – Letting Fibromyalgia Get to You
With fibromyalgia, you will have days when you feel down, even way down. In times like these, don’t let your symptoms of pain, depression, and frustration make you feel guilty. Anyone who suffers from pain constantly will feel this way many times – it’s normal. However, don’t sink into the black hole of guilt or despair.
Instead, find activities you enjoy to bring balance and joy to your life. Activities keep your mind off your pain and maybe bring a blessing to someone else’s life. Many people have found that attending church, spending more time with a grandchild, or picking up a new hobby can help.
Maintain balance in your life by exploring new ways to experience joy and well-being
Patients with fibromyalgia have to modify their lives in order to re-discover balance, joy, and stability they had before FMS came into their lives. There are many treatments, tips, and ideas that are available to them. The main key is to not give up and settle for less.
Life with fibromyalgia can be fulfilling and joyful. Avoid the above mistakes and don’t take life too seriously. There is a light at the end of the tunnel. Support systems, alternative treatments, and determination will pay off in the end. You, too, can find your life again, despite fibromyalgia.
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What other mistakes should people with FM or ME/CFS avoid?
These are very good tips and suggestions. Although #7 is a very good idea, I don’t have that to lean on. Kind of. I have my husband which is awesome but my sister’s and my parent’s I can not rely on. We have never been a close family (we talk when we have to) so I find other ways to deal with my fibromyalgia. I have definitely tried many of your tips. I hope they help others.
“don’t take life too seriously”… I like that one! No doctor of mine ever said that…
That’s a biggie when you have a disorder that affects your stress response. 🙂 Thanks for highlighting that one.
I just want to give others a little hope regarding an off-label drug. Please ask your doctors about Gabopentin (Neurontin). It is not made for Fibromyalgia, but apparently it has been found to help by calming our nerves…yes nerves. In the past, my doctors focused on the muscles…but they finally focused on the nerves. My doctor just gave me the Rx last week, and it’s like a miracle for me.
My Fibro is nowhere near as bad as many, but it is bad. This drug has somehow taken away enough of the pain that I feel I actually sleep at night and feel awake in the morning, ready to go! When I get up after sitting (any amount of time), I actually “get up”! I don’t hesitate, grab something to help me, moan or feel the great pain that I ALWAYS feel anytime I move. There’s a lot more I could talk about but I don’t want to make this toooooo looooong!!! This week has been amazing to me.
For the last ten years I didn’t know if it was Fibromyalgia, or just me getting old. (This started in my early 40’s…what was I thinking???) It took me years to even ask my doctor about it, the Rheumatologist was unsympathetic, he told me I had to change my lifestyle. Hmmm, I should tell my husband not to have cancer, tell my Dad to stop getting old and having dementia, and tell my 15 year old son to stop acting 15! Yeah, easy.
Anyway, my GP was much more sympathetic, and gave me this new drug as a trial. Thank God for doctors that aren’t afraid of going “off-label”…don’t alway have time to wait for the clinical trials that take 15 years to complete.
I am going to post this on as many Fibro Blogs as I can so that others can be helped. It might not work for everyone, but it will probably help some…as with all medications.
Thank you, Felicia
I have been on Gabapentin for 5 years. It does help. I sleep much better. I can not take as much as the Dr. would allow, it makes me too foggy, but can’t get along without it for the pain. It can also cause weight gain—Not happy about that.
I’m glad it’s working for you. I took it with food and it still made me violently ill. Lost my appetite for months losing 20 lbs after being on it for 3 weeks. Dr said keep taking it. I quit because I was sick of throwing up and losing weight. (125 normal)
Combing Sticking With the Wrong Doctor and Not Exploring Alternatives, don’t stick with an alternative practitioner that promises you a cure, puts down any use of medications, etc. It’s an integrative approach which they may be a part of but not The Answer.
Don’t stick with anyone that PROMISES you a cure! That’s a red flag right there. Thanks Kathy 🙂
Hi
7 and 8 are not always easy to organise, when someone else in the family has a severe and more recognisable illness — eg I care for my elderly husband who has severe Alzheimers disease. We tend to concentrate on his problems and his management. But I guess you could say that is my new ‘hobby’ – it certainly keeps me too busy to concentrate on my own problems!
That’s something! 🙂
No7 is my major problem as I have no-one. My family have passed on and I have not been able to make a close helpful friend where I now live. Also the carer organisation wont give me all the help I need, they don’t give me any in the kitchen, which makes eating difficult at times.
You are correct in what you say as I know if I had the help and support I need could live a very fulfilling life:)
The others I mostly do and they do help a lot.
Jazel, Is there someone you could hire to help you with cooking chores? Or perhaps deliver a meal or two a week? I don’t have fibromyalgia but I do have pretty severe CFS and I find that feeding myself is the largest energy sapper of the day.
I’m hoping our Community Rising program will allow you to find friends and help in your area. We’re working on it.
I think one of the biggest mistakes a newly diagnosed FM sufferer makes, is trying to live their old, or normal, lifestyle.
Learning to say ‘No’ to some social events, or even, just asking the family to walk a bit slower, help around the house, take more time out to rest & relax, talk a bit slower/softer, have dimmer lights at night, or any other small thing that makes the pain easier to bear. Many of us FM sufferers are sensitive to noise, bright light or crowds.
Open yourself up to new, more gentle hobbies or pastimes.
And, more importantly, if someone does offer help in some way, accept it – if they genuinely care about your well-being, they won’t think you’re a ‘wimp’ or ‘lazy’ because you can’t carry something heavy or do the vacuuming.
……and if you don’t have family, friends or caring neighbours, you CAN still lead a very fulfilling life. Just pace yourself and find out what works for you.
I keep my home surroundings simple, uncluttered and put everything away after I use it, then I don’t have the amount of housework that others have. I keep all regularly used items at a height where I don’t have to bend. I eat or cook the simplest of meals. In the summer I eat mostly raw food so I don’t have pots & pans to wash (for example). And if my wrists/elbows/shoulder or neck starts to hurt, I get off the computer straight away before the pain gets to the unbearable level. Many FM sufferers try too hard to keep up their old usual routine. If your wrist hurts to chop vegetables, use frozen – they’re snap frozen soon after picking and research has proven that many frozen vegetables contain just as much nutrition as fresh.
“Open yourself up to new, more gentle hobbies or pastimes.”
Great advice. You have to shift, learn some new ways to be happy…what a huge learning experience FM can be.
I don’t have to hike the Sierra’s to enjoy nature. I can find it in little spots everywhere.
I agree Cort.
Nature is everywhere (including the inner city where I live).
I photograph nature every time I go outdoors – the nearby Botanic Gardens, the Zoo (preferably on a week day when the crowds are absent), the local beach and even short visits to the city (where its open and I don’t get too overwhelmed with perfumes & chemicals etc).
I have to try and head for home before peak hour though. I can’t stand and balance on a bus/tram after I’ve been out for a few hours. I need a seat. There are even days when I can’t carry my camera and have to take a small trolley case or shopping trolley to carry it, my bottle of water & bag. But, I still go out when I can.
I get too tired on the computer or indoors for too long – I need fresh air.
In fact, I invariably fall asleep (literally), if I’m on the computer too long.
I have to be honest and say there’s no way I could be interactive on a forum again, I just lose concentration and can’t follow a discussion any more. I can’t even remember what forums I started following and then stopped because I found them too tiring.
I can only read the occasional article on your website, Cort.
I’m glad your quality of life has improved so much and that its worth it to the read the occasional article – and that you keep sharing what’s worked for you. I have trouble keeping up with them myself 🙂 🙂
We would all love the breakthrough that solves this and returns our energy back but until then I guess we do the best we can with what we’ve got. I think you’re doing that very well 🙂
I am completely convinced that conservation of muscular effort is the key to ME/CFS: Ramsay and Acheson both reported that complete rest from the early stages gave the best prognosis, and Jason has published a piece of research showing that gradual improvement takes place when a patient consistently keeps their activity level below their perceived level of available energy. When I got ill in 1986, the advice was to keep within 2/3rds of what you could do. (I have followed an erratic course towards being ‘nearly recovered’, interrupted by a one year set-back when I took the advice of my chiropracter and started riding my bike around, and another when I looked after a small dog over Christmas, taking it for little walks a few times a day. I also wonder if starting to be in pain would have happened had I not been determinedly lazy (and very lucky in having help and a job that could be done in bits – going to meetings and writing reports and being able to spend days in bed making telephone arrangements). So this is really a question – how much of a role does resting/conservation of muscular exertion have in fibromyalgia? What do FM people find out about that in keeping their energy diaries? I’ve written a short article which can be found at http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs and I’d really appreciate any feedback on this issue. I don’t have FM so I can’t speak from experience as I can about ME/CFS.
In the recovery stories project I came across a doctor who has repeatedly helped ME/CFS patients significantly using this approach. I think you will like the Rowe blog coming up which suggests that some types of movement don’t work, He doesn’t advocate no movement but his hypothesis provides a reason why movement is so difficult and then he suggests ways to make it less stressful. …
Two additions: Les Simpson, a hemorheologist who has studied ME, believes ME symptoms arise because the red blood cell population in many chronic illnesses, including ME, becomes dominated by cells which take a different shape from the normal ‘biconcave discocyte’, with the result that they are no longer able to traverse in the tiny blood vessels that serve the muscles, brain and endocrine system, resulting in those areas getting insufficient oxygen and causing a build-up of waste products. He says that 6 g of fish oil a day, or 4 g of genuine Evening Primrose Oil can improve this situation, and many ME patients have found their well-being improved by trying this. I don’t know whether it would be helpful for FM, but neither recommendation is likely to cause any harm, and it is available and more or less affordable.
The other addition is that I am writing a Ph.D. on the conflicting paradigms of ME/CFS and how the psychiatric paradigm gains influence. As I suspect that this conflict also impinges on FM sufferers, any information and recommendations that FM patients give me will be influential in what I write.
Find other avenues go explore. I made something good come out of mine I wrote a book of chronic illness poems to help others like me, to help families understand and I give 20% to research to give something bk for the support I received.
Still being able to achieve something has helped me no end . Just to feel productive and useful is amazing
Do you have a link to those poems Micky?
I always feel more hopeful, and positive, after reading your blog…my thanks to you! I have no help from my family (three children living within a half hour), so I found an aide who was amazingly helpful and charged but $10 an hour. She moved away…terrible loss! However I inquired at my church and have found another wonderful woman who is willing to do my food shopping…a true gift!
I have been living with ME/CFS since the 70s…long time! I have found that as long as I don’t overdo I’m pretty much OK. And overdo includes something as simple as phone calls…they wipe me out, so I have informed my friends that much as I love to hear from them their calls have to be limited to five minutes!
I live in south FL, so I am blessed with lovely weather all year round. I find sitting on my front porch watching the sky while enjoying a cup of coffee is also a gift! I also am spoiled with wonderful fresh produce all year round too…I make very simple meals of veggies and a protein.
I try not to feel sorry for myself…when I start to “slide”, I remind myself things could be soooooo much worse!!! 🙂
I am new here, a link to this site was provided by someone on my fibro and ldn list. Nancy’s remark about not feeling sorry for yourself really hit home. I was a high energy, high productive person until I had thyroid cancer in 2002 when I was 64. Before that I was aging well; after that my fibro came out of hiding (I was diagnosed in the mid 80s, but had no time to be sick), and I began an accelerated slide downwards. Helped by breast cancer in 2007, kidney cancer in 2008/9 when I lost a kidney, had the other ablated. The despair really began after that and when I had dental surgery last year that led to a difficult recovery with much pain, I fell into a black pit. Recently I read that breast cancer such as mine no longer leads to immediate surgery and this morning I read the same about papillary thyroid cancer. It is hard not to feel sorry for myself; mornings are the worse. That’s when I meditate and pray. It helps. When I get to lunch, I take my first dose of pain meds (I also have spinal stenosis, a few other things), take a second dose four hours later and am able to do a few things in and out of the house.
Last night we went to a concert, singing, the first night event in a very long time. I took extra pain meds and had a lovely time. My husband did too and we are going to do this again. It was at a college about 30 miles away and the tickets were reasonably priced. We are also broke, which does not help my fibro, cannot hire help and my husband, who is disabled, is still very strong and helps a lot in the house. My local community college also has events. Some free. Now that I know I can do this, I have something to look forward to that will brighten up my life.
Searching the various calendars, making a schedule, arranging for tickets gives me something new to do (good for my brain) and when I set last night up, I had a feeling of accomplishment.
I also give thanks on a daily basis for all that I have.
Rather than making a mistake, I think most of us lose sight of a possibility. I am even uncomfortable talking about it because it seems so selfish. But I am beginning to choose it for my future.
Whatever else fibromyalgia means it means that I am no longer able to make my body obey me or achieve my goals. I cannot take care of people I felt all my life were my responsibility. I cannot even take care of myself without help from others. Clearly my purpose now is different. I believe the rest of my life is supposed to be about myself. My job is to embrace reverie. Now I can explore the past and understand lessons that happened so quickly I missed the point back then. Now is the time to recognize things about my behavior that I would like to change, and in the much smaller scale of my world successfully do that. I want to listen. I want to explore what I love. I want to avoid the pain, threat, anger and shame that seem to be all the world wants to talk, write or think about now. I have been brought to an abrupt halt in my life. It is time now to decide what I want to leave behind and who I really am under all my defensiveness and self-criticism.
My new life is about what you do when you cannot do anything to help, change or influence. When I am sick of thinking about fibromyalgia what do I choose to think about instead. People all over the world for thousands of years have experienced pain, illness and limitations. Mine is nothing unusual and I don’t need to be rescued. I don’t need to be cured. I only need to be what I am thoughtfully.
This really speaks to me. I have been going over past events in my life, many with regrets. I am very self critical. How do you put past regrets out of your mind and go forward? By trying new things, staying busy with things with positive outcomes? Will I ever be able to forgive myself?
Hi im new here, after an accident in 2009, i never imagined the horror im going through now, i have the bending in of my 10 toes plus tremors, had surgery on my neck in december to free some badly crushed nerves, i was doing ok, but at the end of jan it came back worse than before, multiple times a day now, im on Lyrica, tried other meds only this gives some relief, i have no Family support, boyfriend left in Feb, a few friends pitch in, im just fed up, cant go anywhere, & here in Trinidad, the Doctors are not versed in Fibro….
I have done a fair bit of research on both fibromyalgia and rheumatoid arthritis, and it does seem like one of the most frequent issues patients have is with their rheumatologist. That being said, I can see how sticking with the wrong doctor is something that happens far too frequently. Unfortunately, fibromyalgia remains widely misunderstood and many who are diagnosed with it have never heard of it before that day. If they haven’t read up on the latest treatments being applied to this syndrome, they may not realize that their doctor isn’t providing the level of care that they could be getting elsewhere. I definitely agree that this could be one of the most costly mistakes a person could make.